Oct 16, 2018 by Downsyndromecentre
On 6th July 2013 our second son Adam was born. We already had a 3 year old son Cormac, and had done everything under the sun to get pregnant this time round. I’d had acupuncture, taken traditional Chinese herbs, totally cleaned up my diet, did mindfulness, listened to mediation cd’s on ‘How to get Pregnant’ – you name it I had done it. So thankfully when it finally happened and we discovered that we were having another baby the joy was overwhelming. I counted those weeks down week by week always in the back of my mind I would say ‘Please God all we want is a healthy baby -’ my scans were all ‘normal’ and until 6th July 2013 everything was ‘normal’.
It was still another 9 days until my due date. I’d felt a bit odd that day but said nothing to Kevin my partner not to have any fuss and anyway it didn’t suit me to be in labour that day as I wanted to clear my desk in work the following Monday and officially go on maternity leave. Kevin and his friends were putting the boat in the river that night to go for a blast on the River Slaney, my pains started getting stronger around 6.30 pm but I said ‘ah I’m grand, it’s probably because the baby hasn’t much room left’. Off Kevin went, I’d put Cormac to bed around 7 pm and then the pains really kicked in. So low and behold I phoned him @ 9 o’clock to say ‘I think I might be in labour but I’m not sure as my waters haven’t broken’ he was in our front gate like a bat out of hell twenty minutes later.
So we arrived in Wexford General Hospital @ 9.50pm, I was still in denial that I was in labour at this stage. Into maternity we go, ‘ah I’m grand’ I tell the midwife, ‘I just have a few pains but I don’t’ think I’m in labour’. ‘Sure we’ll have a look at you in a minute, pop up there onto the bed’. Now I hear someone wailing like the banshi down the corridor, ‘oh Jesus’ I’m thinking I really do want to go back home now. ‘Ah lovely, you’re 5 cm dilated’ Ann the midwife said ‘would you like your epidural now?’ ‘No’, I thought ‘I’m doing this naturally if I can and sure I’m not even in that much pain ….really.’ Kevin and I sat there in our room listening to the commotion down the corridor, quite entertained really, excited that our baby might make an appearance soon, well maybe tomorrow and sure I hadn’t even used the gas and air yet. Adam didn’t give me a chance to reach for the gas and air as when he did decide it was time to make his entrance, Kevin had to shout into the next room for help as he thought the baby was coming, and he was making his appearance as Ann rushed into the room. ‘Oh, congratulations, you’ve a baby boy’ – the shock, a baby boy, my mother was convinced it was a girl by how I was carrying (I’m laughing even typing this now) I’d even bought pink baby clothes in a baby shop closing down sale!
The feeling of relief and elation was just divine. We kissed our gorgeous 8 lb little bundle and then suddenly the room turned silent. When I looked at the foot of the bed, there were three more midwifes all looking at each other, one smiled a funny kind of smile, one of kindness but maybe a tinge of pity or sadness. Ann puts her hand on mine and says looking at us both, ‘so we think your baby may have Down Syndrome given some of his facial features and low tone, but we will have the Paediatrician come and have a look to check baby,’ I will never to this day forget the shock at that news, what did they mean ‘Down Syndrome?’, I might have been 38 but give me a healthier fitter 38 year old, these things only happen to other people, right?
The rest just goes blur but I do remember hearing ‘bla bla bla… Down syndrome’ and I remember feeling like my heart was actually breaking hearing those words. So off he was whisked to the baby care unit and we were told all that ‘may’ be wrong with him, he may have a mild to severe heart defect, his bowel may not have formed properly, he may have a hearing impairment or be deaf or have bad eyesight. Oh and he has low muscle tone, every bit of information those first 24 hours was just too much. How were we going to cope having a baby with Down syndrome? Kevin had gone home to bed at about 3 am but instead of going to sleep, he sat up googling (to everyone who gets this news, do not go near Dr Google, this will not help your state of mind one bit!) I had gone to my room and Adam was brought back from his ECG in the baby care unit and his results were really good, his heart looked ‘normal’ and he was nice and pink, apparently that’s a really good sign. I looked at his beautiful little cherub face in the cot beside me and stared at him, all I could see was Down syndrome when I looked at him, I just couldn’t believe this was happening to us.
The next morning I’d woken up after maybe dozing for an hour on and off and each time opening my eyes and praying to God this was all a bad dream. And then realising that it wasn’t, oh no. Kevin appeared into the room around 9 am with a bowl of fresh fruit that I love (he reckoned I better eat as well as I could and stay healthy now more than ever) he looked so tired but was trying to keep things ‘normal’ like saying we might take a walk in a while and get a bit of fresh air. He held Adam and would look at me now and again saying ‘I don’t think he does have it Sharon’ to me replying ‘maybe, yeah turn his face this way or that way, oh I can’t see it that way’. The next few days our families and friends came to visit, my emotions were all over the place, I was like a deranged lunatic laughing hysterically one minute and the next the wave of emotion swept over me like a tsunami and I would just sob and then the tsunami would wash back out and I’d be ok again. Then my dad Marty would tell me a joke that wasn’t even funny (they rarely are) and we would both roar laughing together, my laugh making him laugh and suddenly everything was ok just for a minute anyway.
One thing I know now is how important it is to have good people around you. Had it not been for the fantastic family and friends we had helping us at that time by just being there, phoning to see how things were, making tea, feeding us and basically just by being there, we were so, so lucky to have the circle around us almost like a little buffer when we needed it. Getting home reality hit hard, although we had a heatwave outside and the weather was just glorious, all I felt and could see was a dark cloud over us. I didn’t think I’d be a good mammy, I though Kevin and I would never survive having a child with special needs, I felt so sorry for Cormac having a brother who was ‘different’, I felt sorry for Adam, I just didn’t think we would ever come to terms with our little boy having Down syndrome, what about the future, what about in 30 years’ time, that thought in particular was what kept me awake at night, the idea of being a little old lady holding the hand of a thirty something year old with DS as we walked along the Main Street in Wexford. Thank God I did plenty of bawling and crying, I cursed God for doing this to us, I thought why the other mams with their ‘perfect’ babies, some who hadn’t even bothered taking their folic acid or eating properly, maybe even smoking and drinking, and there they were pushing their ‘perfect’ babies around in their shopping trollys in Supervalu without a care in the world. Our friends had a baby the day after Adam was born and were in the room next to us in Wexford General Hospital, I couldn’t help feeling envious looking at her holding their baby girl and thinking ‘she’s so lucky!
Now, a funny thing looking back is the weird, sometimes hilarious things some people said to Kevin or I the first few weeks to try console or comfort us. One doctor told me when Adam was about a week old that she understood how devastated we felt having our baby. I’d suddenly thought she must have had a baby with DS and the baby maybe had died when she’d started saying this and then she said ‘we found out our son only had one kidney after an injury playing rugby’. I remember looking at her wondering what in the name of God having one kidney had to do with having a baby with a DS diagnosis. Anyway it was relevant to her and she was only trying to help. Someone else told us that she knew how we felt as they had bad news about Poppy the year before that she had diabetes and was losing her sight – Poppy was her dog! But I would probably have been the same myself saying something totally inappropriate, because there really are no words and I can now think of those things and how they were said and it makes me laugh out loud, I think they’re priceless, definitely if I ever do a bit of stand-up comedy I’d have some great material.
So here we are 5 years later. We are still alive and breathing. I went through a sort of grieving process for the first few months, I cried, sometimes I wailed, and I talked and I talked and I talked (anyone who knows me will understand this!) Kevin propped me up while I was falling apart and when I started to feel somewhat ok and myself again, he fell apart in his own way though without the wailing and crying, he was much quieter and just looked really sad. I think we all deal with this our own way and his way of dealing with it was to do what he loves to do, cut timber, spend time In his shed the ‘man cave’ and be around his few close friends talking about engines, the price of diesel or whatever they’ve bought on Done Deal!
Adam and Cormac have the most gorgeous bond that brothers do in a love/hate way but in a very ‘normal’ way. Cormac is now 8 and the doting big brother who is so proud of his little brother but would still kick him off the sofa if he sat in ‘his spot’. Adam has exceeded all our expectations, he is the heart of our family. He holds us all together, he loves group hugs, our home is a place of happiness and laughter (most of the time when the boys aren’t fighting over something that brothers fight over like lego figures, teddies, food ‘don’t touch my food Adam’ the last piece of apple tart,) It’s only ever for a few minutes though they’re quickly back to their normal banter and loving each other again.
I think having Adam has opened my eyes to the huge capacity we all have to love. Having had no experience of ever being around anyone with Down syndrome or any disability when I was growing up, I felt so scared in the beginning for his and our future. Someone I know told me when Adam was about a month old to put the word ‘disability’ out of my head and instead think of his ‘ability’. That was a turning point for me, when I focused on even the little things he could do, little things turned to bigger things over time. After maybe 6 months, I remember going in to his room one morning to pick him up, I remember reading Brendan O’Connor’s article earlier that year about his daughter Mary who has Down syndrome and how he noted only seeing Down syndrome in the beginning every time he would look at her and after a while looking at her one particular day and only seeing Mary. This is exactly what happened for me, that morning looking at our happy, smiling baby boy in his cot, I saw Adam. I didn’t notice his ‘features’ all the markers that indicate he has an extra chromosome. I just saw him with his little head of wavy strawberry blond hair and blue eyes and that smile that would melt you.
For anyone reading this who’s baby is very young, just know that they will do everything they are meant to do when they are ready. I worried that Adam wouldn’t walk, wouldn’t talk, he sat up at 8 months, he crawled at 16 months, he walked at 2 years and 3 months. He started to talk around 3 years old, only a few words early on and now his vocabulary keeps on growing. Yes there is a lot of work involved when you add all the interventions together like Occupational Therapy, Physio, Speech and Language Therapy, ENT appointments, Paediatric appointments the list goes on. But so does life go on. We have grown together as a family and I now think how lucky we are to have the two boys we have. I would have happily traded Adam in that first day or even week or two for a ‘regular’ baby but thankfully I wouldn’t swap him for anything in the world now.
I have been lucky to have had a wonderful boss where I work who’s background was teaching and whose passion for inclusion in education has really opened my eyes to how we all have a place in this world no matter what our ability, we are all valuable. Adam is due to start junior infants in our local school, Glenbrien National School next year. It is a 3 teacher school of approximately 70 children who all know each other and most know Adam already from being at the school gate and high-fiving each other. He can’t wait to walk in those gates with his big brother Cormac and has started to say ‘mammy me go Cormac school? He loves to swim, we’ve had him in the pool since he was 8 weeks old, his teacher Michelle O’Neill has brought his confidence on so much in the water that he is now able to swim a few feet on his own, loves diving off the side into the pool with Cormac and has done Wexford Water Safety in Curracloe beach the past 2 years and this year was awarded ‘Youngest Swimmer’ and also ‘level 2 swimmer’. He is just a regular little boy who happens to have an extra 21st chromosome. He may have to work a lot harder at times to learn how to do things we take for granted but I have certainly learned to appreciate things much more. I think having a child with Down Syndrome puts life into perspective, the small things I once worried about no longer matter that much. I appreciate what I have and feel blessed to be Adam’s mammy.
by Sharon Healy